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Thursday, August 18, 2011

Head Under Water....

.....and they tell me to breath easy. Has anyone ever heard that song? That's how I have been feeling lately.

We've had six doctors appointments this week. Yesterdays appointment was 3 1/2 hours long! Little Catherine was with me, as well as Francesca and Victoria, so you can just imagine the fun we had. Towards the end of the visit, we were tossing tongue depressers at each other for entertainment.

The medical profession is kind of getting me down. First I had to hear from the nutritionist who said, "You needed to watch out that Victoria doesn't gain too much weight." Say what? Are we talking about the same child? The one that is diagnosed with failure to thrive?
Then she told me, "it might be hard for Victoria to loose the weight later. I mean, it's not like she is going to be mobile."

"You are aware that she isn't even on the growth chart yet, right?" I bellowed, "AND, I want to tell you, she is mobile! AND she just saw the GI doctor on Monday and he said she is doing fine!" I was getting a little testy, especially since I hadn't eaten anything but Frosted Flakes all day.

She still didn't shut up. "Well, can you tell me exactly how many ounces of water and exactly how many ounces of formula and solids she is getting everyday. And break it down by individual meals?"

I didn't even bother to answer that one. Clearly this woman was insane.

Then, I had to deal with the speech therapists.
"Why isn't she in speech therapy yet?", they demanded to know.
"Didn't you all tell me that she wouldn't be able to speak until she had her cleft palate surgery?" I asked. "Didn't you say that since she STILL has fluid in her ears, she can't hear much?"

I think I was getting a little bit defensive.

So, we finally got home. I was cranky. I needed a nap, but no, my kids really know how to throw a party with the dogfood bag. It was kind of hard to stay cranky after watching them! So I ate some "Mike's and Ike's candy and cheered up a bit. Nothing like a little sugar coated food dye to restore my equilibrium.

My friend, Jen, (who adopted three kids at the same time and has 9 kids under the age of 8! She is way cooler than me! Here is her blog: http://letsfillthevan.blogspot.com/) asked me why my kids don't ever have clothes on n the pictures! Well, Francesca is a big sweat ball and Victoria is super messy with her food. Skin cleans way easier than clothes anyway, right? Is this weird? You all know I have no weirdness radar.

Then, little Catherine bugged the dog one time too many and he scratched her. I don't usually freak about blood, but the blood kept gushing and gushing. Francesca was screaming her fire engine scream. Then, I noticed that Victoria was soaking wet in her crib. She had pulled out her NG tube and the formula ($3 a bottle) had leaked everywhere!

It was a tad bit overwhelming. I wanted to climb into my bed and hide, preferably in another country. Or maybe even Mars.

So, off to the emergency room we went. I was so glad my mom came with us!

Two hours later.

Catherine actually screamed more about having her temperature taken than she did when she got the stitches.

Three stitches later. I wonder if Catherine learned her lesson?

Today Victoria had to get fitted for some new hand splints. For two hours I had to hold her down while they stretched her fingers. I know it's for her own good, but I hate to see her in pain. She can't use her hands at all when she wears them, so she only wears them at night. She can't play with any toys in her crib. I kind of felt like I was betraying her.

For a while she just lay there in her crib, pondering her life. She rolled over. She sighed.

She looked at the splints.

Then, she tried to touch a toy. She looked up and smiled at me.

Lately I've been questioning whether I was going to be able to do all this, but if little Victoria can hang in there, then I guess I need to stop my whining!

14 comments:

OMG What a day. And poor little Catherine. that beautiful face. I hope she doesn't have any permanent scaring. :o(

Don't let the nutritionist get to you. I have found that most Drs. are clueless when it comes to children with global delays and failure to thrive. And don't even get me started on speech therapists. The first one we fired was in Tbilisi and that was followed by 5 stateside. It wasn't until she went to kindergarten that we found a speech therapist she would respond to and one who understood the special needs of an internationally adopted child. One mother I know didn't realize her son was profoundly deaf for over a year? The Drs. didn't pick up on it. The special preschool she sent him to didn't pick up on it. And perhaps the most amazing thing is the family didn't pick up on it. Hearing is extremely important in learning language and speech. Anyone who tries to tell you otherwise is a fool. The best thing you can do for your children diet wise and this also helps with speech is let them explore new flavors textures every day. I always give my daughter a serving of everything. No matter how yuky it is.. it's on her plate. Studies have shown that you have to have kids try a food over a dozen times before they decide to eat it. The problem with these kids most of them don't know how to chew properly. Many were fed mush in country and were fed so quickly they didn't have time to chew and just swallowed their food. As a result their tongues have weak muscle tone and they have to learn tongue placement from scratch which makes them delayed in speech. You're case is even more complicated because of water in ears and a cleft palate. You're doing it right. Try to keep your cool and listen to what they say but take it with a grain of salt. You've been down this road before. Chances are you probably know more then most of these people regarding what's best for your children. Hang in there. I wish I lived locally so I could help you out on crazy days. ;o)

I just usually figure that the therapists and medical professionals ask those stupid and irritating questions because they have to. Don't take it personally. You are the mom and you do know what you are doing.

I don't know about where you live, but it's HOT here. My kids are always running around in diapers. Who needs more laundry to do? Not me.

Sophie has a cleft palate too, and our regular Dr. said do speech therapy AFTER the repair. well we finally went to see an International Adoption Dr. in Seattle (So glad we found her, just wish we did 5 months earlier!) and she said start speech therapy now before the palate. So we started today. Tubes go into Sophie's ears on Monday and we'll see how that helps, cleft palate surgery in Oct. Lord bless you and your crazy family!

Oh there are so many opinions on when to start various services. But really, to start ST, etc. takes assessments first, and your schedule isn't exactly looking like you thought it would. (mine never does either!) We jumped on the wagon right away, negotiating around Axel's suddenly diagnosed and very dangerous spinal problem, he he STILL didn't start services until he'd been home three 1/2 months, and he was my only new one!

Love that nutritionist. Did she see Victoria when she came home? Does she realize that if her pictures weren't posted on YOUR blog, none of us would recognize her? She gets more and more beautiful every day. I remember when you asked about the "dents" in her head, and I told you I thought it was from malnutrition, give her time. Wow, I would never have imagined she would look so drastically different. I don't know, I think she has a ways to go before reaching the "overweight" point. LOL

With Franchesca, some people may not realize that kids with Apert syndrome very often have hyperhydrosis (excessive sweating) And really...why do unnecessary laundry? LOL Axel has spent a lot of the summer in his underwear. He was in the halo, with a hard plastic shell over his entire torso which was lined with lambs wool, and the waistbands of pants or shorts was tough to get up underneath it. Underwear it was!

Ouch for Catherine! She knew you were bored so decided to spice things up a bit for you. What a girl won't do for her mom.

You are such a good mom. Seriously. Hopefully somebody tells you that every single day. As far as the diapers only kiddos- I'd say, that's toddlers! As we speak my 3 year old is running around in her undies! I think it's "freeing" for them lol, the one thing they can control. I figure, as long as we are in the house and not at the grocery store or something, who cares what she wants to wear!

MY kids would stay completely naked all the them time if allowed. I love to have them dressed but it is definitely not worth the hassle when we're at home if they don't want to wear clothes. So no you're not weird!My heart breaks for you with all those doctors appts. There is absolutely nothing more completely frustrating in every aspect than dealing with doctor/hospital visits unless it's perhaps to get a rapid strep test that actually comes back positive and you get your antibiotics and are out the door in under 30. Otherwise, I'd just rather bang my head against the wall for an hour while my kids throw food at me.Hang in there.

You're amazing and I love you! Is that the same Victoria I met in Kiev? She's getting fat! I love it! Fat and healthy! Woo hoo! Keep going, mama, you're doing a wonderful job! Laughter is good for the soul!

As Dori says in Finding Nemo "just keep swimming, swimming, swimming." I truly can not imagine making it through 24 hours in your shoes, you are an amazing woman with a heart of GOLD! I first found your blog shortly before you brought Victoria and Francesca home and I beieve in my heart that you saved Victoria's life. She looks so healthy and happy now, you deserve a lot of pats on the back and there has to be a boy scout badge out there with your name on it. Follow your heart Mom, you're doing fabulous!!

I thought I was having a crazy day and then I read your post!You're a great mom :) And what a sense of humor! Your posts always cheer me up. I bet most of the moms who read this and don't know you IRL would love to have you as a friend.I leave my toddler in his pj top and diaper half the time. Or just let him run around naked. Or just in a diaper. Certainly he's not matched out in Gymboree everyday. Seriously... who cares? Not me. And certainly not him!

Wow, what a day! Poor Catherine, I hope she's feeling better now. And Victoria's expression in those last three pictures just tells a story. She is such an amazing girl. I think my kids spent a lot of time without excess clothes at that age, too. Why do all that laundry? hee hee. And soon enough they will be putting their own spiffy outfits together. Well, maybe not TOO soon.